Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

December 31, 2015

Thursday, December 31, 2015Tonight's picture was taken in December of 2002. We had a snow fall and I opened up our front door for Mattie to check it out. Mattie was sitting in "tot wheels," his favorite vehicle and mode of transportation! Mattie could zip around our entire first floor in this thing, and I honestly do not know how he managed tight corners and spaces. But he did it! Mattie wheeled himself right over to the door to check out the snow!

Quote of the day: Our hearts grow tender with childhood memories and love of kindred, and we are better throughout the year for having, in spirit, become a child again at Christmas-time. ~ Laura Ingalls Wilder

Today was our first full day on the cruise abroad the Royal Princess. It is amazing to us that there are almost 4,000 passengers aboard this ship, and yet things don't seem crowded. Perhaps it is because the ship is so large. However, just walking from one thing to another on the ship (without purposefully exercising), I walked four miles today. Which should give you a feeling for the size of the ship! One of the features on this ship is the "Sea Walk." It is on deck 17 and this walkway literally juts out over the ocean. It has a glass floor so you can see down into the water.

This is what the walk way actually looks like. We were busy today with activities from line dancing, zumba, bingo, and walking. Yet what amazes me is you really can't sit outside and enjoy the weather. Meanwhile inside the ship is like a freezer, with air conditioning! The way that the decks are arranged, once the ship is moving, air passes over it and the outdoor decks are like WIND TUNNELS. I mean wiping wind, not just a light and inconvenient breeze. It was Peter who warned me as he invested deck chairs today and when he came back into our room to share his observations, he said.... NO WAY! I did go check it out the decks myself, but naturally if Peter (who can tolerate all sorts of weather) is telling me no way, he means it. We never sat outside today!

In 2013, the ship was christened by Her Royal Highness The Duchess of Cambridge..... Catherine Middleton (who is married to Prince William). In the main lobby area of the Royal Princess, they feature this tribute area to Cate, with her photo and fresh flowers.

There is also a museum style display in the lobby which has the top of the champagne bottle that she used to christen the ship, the scissors used to cut the rope holding the champagne bottle, and a replica of the dress she wore for the occasion.

This is a first for me. Princess cruises now has quotes inside each of their elevators. As my faithful readers know, I love quotes. So I snapped this photo today on us in the elevator. Not easy to do, given the volume of people using the elevators. Typically they are SO full, I can't even see the floor, much less photograph it.

This is the piazza or main town area of the ship. It is actually quite lovely, spacious, and full of gold coloring, which of course reminds me of childhood cancer awareness. The crew was getting the piazza ready for New Year's eve, and as you can see there were a ton of balloons overhead that will be dropped at midnight.It is hard to believe that we will be celebrating our 7th New Year's without Mattie in our lives. We continue forward somehow, but we will never move on.

December 30, 2015

Wednesday, December 30, 2015Tonight's picture was taken in December of 2002. Though Mattie was only 8 months old, he desperately wanted to walk. Well actually run. He wanted to skip the rolling over and crawling phase. Mattie HATED being on his tummy, and avoided it at all costs. What I loved about this onesie was the adorable reindeer on the back!

Quote of the day: Christmas, my child, is love in action. Every time we love, every time we give, it's Christmas. ~ Dale Evans Rogers

Today we boarded the Royal Princess ship in Port Everglades, Florida. This is the largest cruise ship we have been on with 3,700 passengers and 1,500 crew members. One thing you notice right away when taking a cruise is how incredibly talented, hard working, and efficient the crew is.

Leaving Ft. Lauderdale has to be one of my favorite sail aways. As we sail out of the harbor, we pass incredible homes by the water. This modern number caught my attention.

Why did I photograph this condo? Because as the ship departs, people are standing on the balconies. Not only are they waving, but when the ship sounds its horn, people on the balconies respond with cow bells, air horns, and cheers. It is truly funny and fun. What caught our attention is the ship's horn played the Love Boat theme song. That was a first, we never heard that before.

This beach is near the condo above, which we passed along our sail away.

This is the last sight of land you see before getting out into open water. It is our official "Goodbye" to Florida!

December 29, 2015

Tuesday, December 29, 2015 -- Mattie died 328 weeks ago today. Tonight's picture was taken in December of 2002. Mattie was 8 months old, and I can still remember sitting Mattie in front of the tree! If I remember it correctly, Peter snapped the photo, but Mattie was looking up at me. This was Peter's joke all the time.... he felt that Mattie always knew where I was and was focused on me.Quote of the day: I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. ~ Taylor Caldwell

On September 8th, Brady Dennis, a reporter for The Washington Post interviewed Peter to seek his opinion with regard to using pain medications like Oxycotin for children. The article was entitled, Why the FDA approved Oxycotin for kids as young as 11. Once Peter made the connection with Brady, he then shared with Brady the work we have been funding to develop psychosocial standards of care. Brady suggested that Peter and I meet with him for an interview. Brady did a two hour long interview with us, which was followed by another interview in our home. When we were interviewed at home, there was a Post photographer, Bill O'Leary, who came along. The irony is Bill came to our home in 2010, when the Post did an article on us. Bill remembered our home, but was impressed with how we transformed it post-Mattie's death. When he saw our home in 2010, it looked like a warehouse filled with all of Mattie's hospital items and gifts he accumulated in his year of treatment. The Psychosocial Standards of Care were published on December 23, and now six days later, a Washington Post article was published to announce this historic moment! The article is below:How one couples loss led to a push for psychosocial care for kids with cancer

Peter and I flew to Ft. Lauderdale today. At first we weren't sure we were even going to make it out of DC. We were on the plane, sitting on the runway, when all of a sudden the pilot came on the PA system to tell us that we had to go back to the gate because of an indicator light error. We were at the gate for 90 minutes, with crew fixing parts and other issues with the plane. We had very anxious passengers aboard who wanted to get off the plane. However the ticketing agent came aboard to let us know that we could leave the plane, but that another flight to Southern Florida wouldn't happen for at least another 24 hours, given the holiday season traffic. We flew in clouds until we got to Florida. This is the site we saw flying over Cape Canaveral. The circular area closest to the water is where the space shuttle used to launch from.

December 28, 2015

Monday, December 28, 2015Tonight's picture was taken in December of 2008. Mattie was in the hospital right before Christmas. His room, his wheelchair and even his feet were decked out for the season. We literally had Christmas lights all over the room, a magnetic Santa attached to Mattie's chair, and of course with the Christmas stockings Mattie received from friends, he decided to wear them! However, if you look closely you will notice that Mattie was holding a frosted donut. Mattie went through a donut phase during treatment and though he rarely ate the whole thing, we tried to bring him whatever he desired to eat since he rarely was hungry and tolerated food.

Quote of the day: Ever since the Christmas of '53, I have felt that the yuletide is a special hell for those families who have suffered any loss or who must admit to any imperfection; the so-called spirit of giving can be as greedy as receiving--Christmas is our time to be aware of what we lack, of who's not home. ~ John IrvingI found John Irving's quote tonight and as soon as I read it, it resonated with me. So many people know that I am not a Christmas fan but I am not sure they understand why I feel the way that I do. Irving's quote captures exactly how I feel, especially when he stated that..... "Christmas is our time to be aware of what we lack, of who's not home." That says it all! Though I have been home two days, I feel very disoriented. I just finished laundry and unpacking and now I am packing for a completely different trip. Peter and I are flying to Florida tomorrow to meet up with my parents and to go on a cruise. Some people travel well, I am not one of those people. I find traveling very exhausting, especially during the holidays when I am surrounded by families. The next time you hear from me, I will be in Florida.

December 27, 2015

Tonight's picture was taken in December of 2008. Mattie was in the clinic getting his experimental immunotherapy treatment. Within an hour of an infusion, Mattie usually became ill with a fever and so exhausted that he couldn't keep his head up. That day, Santa and Mrs. Claus came to the clinic to visit with the children. Linda (Mattie's child life specialist) came in with the Clauses, and together they showered Mattie with all the gifts he loved! From Legos to remote control airplanes! When Santa came into the room, Mattie's head was resting on the pillow in his lap. Mattie tried desperately to keep his head up long enough for this photo. After Santa left the room, Mattie's head collapsed back down on the pillow. Quote of the day: Christmas gift suggestions: To your enemy, forgiveness. To
an opponent, tolerance. To a friend, your heart. To a customer, service. To
all, charity. To every child, a good example. To yourself, respect. ~
Oren Arnold

While Peter and I were in Boston this week, I received an email from one of our new corporate sponsors. They were looking to feature Mattie Miracle at their January management meeting. To fulfill this request they wanted us to send them a ONE MINUTE video about the Foundation.... who we are, why we developed the Foundation, and what we do and accomplish. That is a lot to manage in one minute, which is why the final video is two minutes long. One has to be very succinct even in two minutes. Creating such a promotional video takes a lot of brain power, creativity, and time. Of course when it is emotional content for us, which makes it equally challenging. We couldn't work on this video during Christmas time and because Peter and I are going out of town this coming Tuesday, there was a great deal of pressure on us to develop this video today.Peter and I have different skills and our work styles are different when it comes to taking on a task of this magnitude. Yet we found a way today to have a meeting of the minds, to brainstorm, and then develop. Thankfully Peter is also technologically savvy and was able to identify software that we could use to create a video. Creating a video was a FIRST for us! However, I am a big Barry Manilow fan, and to me his song.... I am your child, is truly touching and captures the essence of how important a child is to a family. Which is why I knew we had to download that song and insert it into the video. I did not want generic music, or music that came with the video making software. I will let you look at the promotional video and decide for yourself if the music works. I feel the timing and the emotions it evokes were exactly what I was hoping for. Though creating such a video in one day wasn't easy, I am so happy that our corporate sponsor suggested we do this and of course that we are given the opportunity to showcase the video in their management meeting. The "Who is Mattie Miracle" video:

Saturday, December 26, 2015Tonight's picture was taken in December of 2008. Mattie was five months into his cancer treatment by that point and already had two major limb salvaging surgeries. In fact, Mattie and Peter were sitting on the hospital bed located in our living room. Mattie was home recovering from his major surgeries, and unfortunately being home and knowing it was the holidays were difficult times for Mattie. Mainly because he was isolated, not feeling well, and the start of his post traumatic medical stress symptoms began. In the midst of chaos and great bouts of depression, there was this fun moment. Peter was working hard at trying to divert Mattie's attention, and these reindeer outfits worked for a bit.

Peter and I flew back from Boston tonight! It wasn't my kind of flight because it was super bumpy. The irony is before we got up in the air, the pilot said that we were going to have a smooth flight. Which is what I like to hear. After take off, we weren't up in the air for long when the turbulence started. It started and it did not end! The wonderful sight in the air was seeing a big Mattie Moon, which Peter captured through incredible clouds and fog!

December 25, 2015

Friday, December 25, 2015Tonight's picture was taken in December of 2007. Mattie was five and a half years old. It is hard to believe that seven months after this photo was taken Mattie was diagnosed with cancer. This photo was on the cover of our 2007 Christmas card and as you can see Mattie wanted to feature his reindeer headband and his Christmas train!

Quote of the day: My idea of Christmas, whether old-fashioned or modern, is very simple: loving others. Come to think of it, why do we have to wait for Christmas to do that? ~ Bob HopeToday marks the seventh Christmas we have acknowledged without Mattie in our lives. If you think it gets easier, it doesn't. In fact, I would argue that it gets harder. Let me put this further into context. We celebrated 7 Christmases with Mattie, and today marks our 7th Christmas without him. This to me is daunting, knowing that Mattie is gone from our lives longer than he is a part of our lives. Last night, Peter and I went to a holiday dinner. Typically I do not attend such events for many different reasons. First of which celebrating holidays isn't easy for us, second I do not like being around children, and third inevitably at parties people ask questions about children. Sure enough, we had two unpleasant incidences at the party. One woman was telling me about her children and I was listening and asking questions. Naturally, the next question to me was.... tell me about your children and how many do you have?! There are many ways I could have answered this question, REALLY! But I also believe that if you ask a question, you should be ready for all kinds of responses. Why is it socially acceptable for me to have to listen to parents talk about their children incessantly, and YET it is deemed inappropriate for me to talk about my child who had cancer and died? I of course know the answer, but there are times I am SO flabbergasted that I need an outlet to express my frustration.... and the blog is the place!In any case, back to my story. At the party, when this woman asked me about my children, I told her in a very simple and dispassionate manner that I had a child but he died from cancer. I can tell you this woman did not even bat an eyelash, but within seconds she disengaged with me and WALKED AWAY! Nice, no? If I had any doubt or hesitancy about attending parties, I can say that encounters like this just reinforce my feelings. MY FEELINGS THAT I AM DIFFERENT AND REALLY DO NOT DO WELL INTERACTING WITH THE OUTSIDE WORLD. A world that doesn't understand the loss of a child to cancer. That was part one from the party, which was bad enough. Part two only got worse. While sitting down at dinner, a man at the party started talking to Peter. He asked Peter about his family! So Peter told him about Mattie and how we lost him to cancer. Instead of expressing sympathy, we got the exact opposite. I was overhearing the conversation, so I was an indirect recipient. Unlike the woman who walked away from me, this fellow couldn't run because he was eating dinner. Instead, of just saying he was sorry, he did one of the WORST things I think people can do with people who have experienced a traumatic loss... he started dolling out platitudes! He told us that it was time for us to MOVE ON and we have to focus on the POSITIVE!!! Though all of this happened yesterday, I am STILL besides myself over both actions. It makes me truly dislike Christmas and those around me even more, and it is in moments like this when I need a lot of space, quiet, and time away from the world to regroup.

Today Peter cooked a hamfor his family. I snapped a photo of Peter's creation.

This is a photo Peter took of us at the dinner table this evening. From left to right are: Nat (my nephew), Chris (my brother-in-law), Don and Barbara (my in-laws), Will (my nephew), Lisa (my sister-in-law), me, and Sydney (my niece).My nephews and niece were close to Mattie's age. Especially Will, who is about a year older than Mattie. It was quite bittersweet to watch my nephews and niece (who grew up with Mattie) opening Christmas presents today, not to mention hearing about their lives and accomplishments. Naturally I can be happy about all of this, because I want them to succeed, grow, and develop..... but on the other hand, it is hard to rationalize what happened to Mattie.

I end tonight's posting with this photo. My lifetime friend, Karen, sent this to me. The lady in pink sitting down was my maternal Grandma. This gathering was to celebrate her 80th birthday! The two women behind my grandma are Marian (who was my mom's friend and a high school science teacher) and Naomi (my friend and Karen's mom). My Grandma and Marian are now gone and though this is bittersweet, I remember these ladies fondly, because they were both special to me.

December 24, 2015

Thursday, December 24, 2015Tonight's picture was on the cover of our December 2006 Christmas card. Mattie was four and a half years old and by that point he LOVED trains. The Christmas train in the photo with Mattie was one of his favorites! He loved having a track around the tree and he especially loved switching the train on and seeing it go around the track, play Christmas music, and puff out smoke!Quote of the day: Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas. ~ Calvin Coolidge

To all our faithful readers, I want to wish you and your family a very Merry Christmas. I took this photo today during a walk, and I felt that this cardinal was the perfect snapshot for the season. It was hard to believe that it was 70 degrees today in Boston.

Though I am not wild about the holidays or Christmas anymore, I do enjoy being able to walk outside and see signs of nature, which connect me to Mattie. Here are some of the photos that captured my attention!

Who would believe that we could see frogs in December? This fellow was sitting on a log, just begging for a photo!

How do you like this Christmas Turtle? Stretching his neck to the sky and appreciating the temperature!

Of course my favorite stop on the walk was to see Rocky, the horse. His stable is right near the nature walk! I am quite certain that Rocky recognized me from yesterday and when I walked away, he let out with one long and big NEIGH!

December 23, 2015

Wednesday, December 23, 2015Tonight's picture was taken in December of 2005. We took Mattie to one of his favorite restaurants in Maryland. He loved it because it had an adorable pond near the restaurant's entrance and it was filled with turtles and fish! When Mattie got antsy sitting and eating, we would occasionally walk with him outside the restaurant. This photo was on the cover of our Christmas card in 2005!Quote of the day: He who has not Christmas in his heart will never find it under a tree. ~ Roy L. Smith

It is the moment Peter and I have been waiting for!!! After four years of incredible work and effort, Mattie Miracle is proud to announce that the Psychosocial Standards of Care for Children with Cancer and Their Families has been published today in Pediatric Blood & Cancer. We feel this is timed beautifully with the holiday season, as it is our way to truly memorialize Mattie and use our experiences with his battle to meet the psychosocial needs of children and families throughout our Country.

The need and creation for a set of psychosocial Standards were our vision, based on our experiences with Mattie who heroically battled cancer for 14 months. The publication of the Standards in a tier 1 Medical Journal represents an historic event. The four year-long project to develop the Standards involved reviewing two decades worth of research, encompassing over 13,000 articles that were meticulously evaluated and graded for inclusion in the body of evidence to support the recommendations made for each of the Standards.

These Standards bring us one step closer to ensuring that children with cancer and their families will have access to psychosocial care throughout their cancer journey. We are very grateful to our core psychosocial leaders (Dr. Lori Wiener, NCI; Dr. Mary Jo Kupst, Medical College of Wisconsin; Dr. Anne Kazak, Nemours Children's Health System; Dr. Bob Noll, University of Pittsburgh; and Dr. Andrea Patenaude, Dana Farber), the entire team of over 60 contributors of this work, and of course our supporters who helped to fund this historic project.

Pediatric Blood & Cancer, created a supplement edition of their journal to house ONLY the Standards! There are 16 chapters. The first chapter is an overview of the project and Standards and the remaining chapters cover each of the 15 Standards.

With the Standards being published today, this meant that we
had to spend some time by the computer publicizing the Standards on social media! Peter
and I took turns on the computer today, but this afternoon while Peter was
working, I went with Peter's parents for a walk around Horn Pond, a 102-acre
water body in the next town over.

I snapped a photo of this adorable Christmas tree in the woods. Right next to the tree is a memorial bench in honor of someone's brother who died. So I assume it is the family decorating the tree in honor of their loved one!

I did not bring my camera with me today, but with my phone, I did capture some photos. We saw all kinds of things on our walk today.... turtles, hooded merganser ducks, mallard ducks, swans, cardinals, a great blue heron, and even a kingfisher.

One surprise along the way was I even met Rocky, the horse. His owner was riding him through the woods and we had an opportunity to chat and meet Rocky. Rocky apparently isn't a friendly sort and he likes to dominate other horses. Yet Rocky and I seemed to have a rapport. His owner said that no one wanted this horse because he is so difficult to care for, which is why I told him he was the horse whisperer! Which he thought was funny.

December 22, 2015

Tonight's picture was taken in December of 2004. Mattie was two and a half years old and I would say by that point, he got the notion of Christmas and what it was about. Mattie enjoyed decorating, adding his handmade ornaments to the tree, and basically everything about the tree. This was the photo on the cover of our Christmas card in 2004!Quote of the day: If you deliberately plan on being less than you are capable of being, then I warn you that you’ll be unhappy for the rest of your life. ~ Abraham H. MaslowToday we went to the Museum of Fine Arts in Boston and saw an impressive exhibit entitled, Class Distinctions, Dutch Painting in the Age of Rembrandt and Vermeer.

This groundbreaking exhibition proposes a new approach to
understanding 17th-century Dutch painting. Through 75 carefully selected,
beautifully preserved portraits, genre scenes, landscapes and seascapes
borrowed from European and American public and private collections—including
masterpieces never before seen in the United States—the show reflects, for the
first time, the ways in which paintings represent the various socioeconomic
groups of the new Dutch Republic, from the Princes of Orange to the most indigent.

Nobles, merchants, and milkmaids are among the figures in
the thematic groupings, reflecting the social order of the new Dutch Republic.
Viewers are encouraged to look closely at the images for clues that
differentiate a mistress from a maid, or might distinguish a noble from a
social-climbing merchant.

A final section explores the places where the classes in
Dutch society met one another. Opportunities for these encounters arose in the
city and the country, winter and summer, indoors and out, at leisure or at
work, on the threshold of a house or of a business. Paintings depicting the
meeting of the classes are among the liveliest of the era.

Street Musicians at the Door (Jacob Ochtervelt)

This was an absolutely incredible painting that was exhibited in the third room, the room which housed paintings that depicted how the different social classes interacted. In Ochtervelt's painting, you can see a wealthy family inside their home. The woman of the house (seated left) was dressed in bright and rich colorful fabric. Her daughter and daughter's caregiver were on the right. Notice the bright and crisp lighting used to showcase this family. Whereas the two street musicians who have come to the threshold of the front door to entertain the family were depicted in more earth tones and the lighting is subdued. The threshold served an important purpose because it was understood that this was as far as the musicians were allowed to go, since it would have been socially unacceptable for them to enter the home. But the painting depicts the Christian value of charity. If you look closely at the woman on the left, she was holding a coin. The caregiver pointed in the direction of the seated woman. She was trying to signal the little girl to approach her mom and take the coin, in order to give the coin to the musicians. Frankly if I did not have the audio guide, I am not sure I would have figured out the messages artistically transmitted through this art work..... between light and how social classes were expected to interact with one another.

A Lady Writing (Johannes Vermeer) portrays a privileged woman engaged in the art of letter
writing. The activity was associated with a certain level of education, and her
clothing and belongings denote wealth.

Regents of the St. Elisabeth Hospital of Haarlem (Frans Hals)

This group of wealthy men comprised the board of a local hospital. It was the way that Hals depicted these men at the table that enables us to understand who was the leader and person of prominence in the group. The man sitting closest to us, not behind the table, was the president of the board. Unlike the other men, he has no shadows on his face, but his face was brightly illuminated . The man on his right was seated with coins in front of him, and therefore was the treasurer of the board, the man opposite the president had paper and a pen in front of him, indicating that he was the board's secretary.

December 21, 2015

Monday, December 21, 2015Tonight's picture was taken in December of 2003. Mattie was a year and a half old and trying to capture him in photographic form was a riot! It was a riot because Mattie never stopped moving!!! So that year, we literally went to Lowe's and Home Depot. We placed Mattie in a shopping cart and wheeled him around the holiday decorations. Mattie always liked going to Home Depot type stores, so he was comfortable in that surrounding! Unlike a MALL! I am sure people in the store thought we were nuts. We took Mattie's coat off and were snapping LOTS of photos of him. Needless to say, this was the photo that went on our Christmas card in 2003. Quote of the day: The only man who never makes mistakes is the man who never does anything. ~ Theodore Roosevelt

Today is Peter's mom's birthday! To celebrate the day, we drove to Rhode Island. Which is about 90 minutes away from Boston. We went to tour The Breakers, a mansion I have always wanted to see.

The Breakers was built as the Newport summer home of
Cornelius Vanderbilt II, a member of the wealthy United States Vanderbilt
family. It is built in an Italian Renaissance style. Designed by renowned
architect Richard Morris Hunt, with interior decoration by Jules Allard and
Sons and Ogden Codman, Jr., the 70-room mansion has a gross area of 125,339
square feet and 62,482 square feet of living area on five floors.[3] The house
was constructed between 1893 and 1895. The Ochre Point Avenue entrance is marked
by sculpted iron gates and the 30-foot-high (9.1 m) walkway gates are part of a
12-foot-high limestone-and-iron fence that borders the property on all but the
ocean side. The footprint of the house covers approximately an acre of the
13-acre estate on the cliffs overlooking the Atlantic Ocean.

The Vanderbilts had seven children. Their youngest daughter,
Gladys, who married Count Laszlo Szechenyi of Hungary, inherited the house on
her mother's death in 1934. An ardent supporter of The Preservation Society of
Newport County, she opened The Breakers in 1948 to raise funds for the Society.
In 1972, the Preservation Society purchased the house from her heirs. Today,
the house is designated a National Historic Landmark.

The road signs right in front of The Breakers! Loved the Victoria sign!!!

The Front Gate entrance to The Breakers! The entrance is regal and impressive and it gives you the feeling that you are going to experience something VERY grand!

The Breakers captured the The Gilded Age in United States history (the late 19th
century, from the 1870's to about 1900). The term was coined by writer Mark Twain
in The Gilded Age: A Tale of Today (1873), which satirized an era of serious
social problems (between of course the wealthy and working class) masked by a thin gold
gilding.

The Preservation Society does not allow photos inside the house. So I downloaded this photo from Google to give you the feeling for the grandeur of the Grand Hallway/entrance. The mansion is filled with gold gilding and the audio tour that they give visitors is incredible. It gave all of us an outstanding feeling for how this incredible house was built in two years time, and how the lives of the wealthy and the house staff differed. It truly was like I was walking through Highclere Castle, where Downton Abbey is filmed in England.

There are two places inside the mansion that they allow photos. One is by this beautiful poinsettia Christmas tree and another is upstairs in the Loge, which is like the terrace.The mansion was gloriously decorated for Christmas with trees and lights in every room, not to mention a room with gingerbread masterpieces and running toy trains.

The gingerbread houses were created by master pastry chefs. Each house was a replica of one of the Newport Mansions. This cutie is Chepstow (another mansion).

When you look outside the loge terrace, you see the Narragansett Bay, the incredible lawns, and my favorites.... Canadian Geese!

As we were leaving the mansion, we passed this beautiful sight of the beach and the Bay! Though December, it was worth the picture!

We asked The Breakers staff today where to head for lunch! They recommended without a doubt, La Forge. What a great setting and wonderful food. I can see why Giada recommends it! it is situated on the grounds of the International Tennis Hall of
Fame, the Crowley family of Newport have owned and operated it for over
thirty-five years. Named after the original owner, La Forge, the restaurant's
menu, style and friendly atmosphere reflect the Crowley family's Irish
heritage.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.